He Came In With It: A Portrait of Motherhood and Madness by Miriam Feldman

Even when having schizophrenia is the hardest on me, I try to present it to others as an illness that isn’t as difficult as it is. I don’t know why it is vital for me to show it in a more accessible and more positive light. I guess because I want people to treat me like they would anyone else. I want to belong. I want a community. I don’t always want to be an outsider.

The truth of schizophrenia can and is devastating. That doesn’t mean there is no hope or that some people don’t thrive despite the illness. A mother, whose son, Nick, has schizophrenia, sent me her memoir to read, and I found her story, her family’s story heartbreaking. Not only did schizophrenia threaten to tear all of their lives apart, Miriam, the author, exposes her feelings of guilt, of failing, or not making the right choices for her son.

At one point in the book, Miriam cries out to God to give her a map for handling the treatment and care of a child with a severe brain illness. At that time, she desperately wanted direction, guidance, knowledge and frequently found herself in a position to act alone.

I think, as a community, we need to embrace and accept every person’s experience with schizophrenia because no two stories are the same. I would like everyone with the illness to find meaning, hope, and some form of fulfillment in their life. I don’t get to choose how the disease impacts every life it touches, none of us do.

I hope you will read Miriam Feldman’s book He Came In With It: A Portrait of Motherhood and Madness. I know even if it doesn’t directly follow your or your family’s experience,  your heart will go out to her family, you’ll identify with all of their humanity and will root for Nick to find some sense of normalcy.

The writing is superb. The sentences often sing.

Let’s support one of our own by buying and reading a book that shows a glimpse into the tragedy schizophrenia can be for many people and those they love.

* How can we help this writer? By preordering her book. Preorders mean almost everything in the publishing world. Here is the link on Amazon.

At Eight O’Clock

At eight o’clock in the evening, we can hear the distant roar of crowds, air horns, someone beating on a drum or a pan. We can see lights flashing on and off. I read in the Nextdoor Neighbor app that it is the nightly display to thank the essential workers. Three nights ago, I stood by my window, and I yelled, “Thank you! Thank you! Thank you!” I clapped as loud as I could. I was a single voice in my part of the city. At eight o’clock last night, my neighbors started flipping their lights on and off. Some of them yelled, and others cheered.

People made as much noise as possible. The nightly display has started to spread throughout the city. It has engulfed my neighborhood. When it gets close to the time to show my support, I open my window, and it never fails, I start to cry. The stress of the day and what we are living through hits me hard. People are dying. People are sick. We can’t go to the grocery store without fear. We can no longer shake hands, hug, or have coffee together. All the anxiety of the day washes over me, and there are tears.

It is my new ritual that brings the day to a close. It is my release, a cleansing, a sadness at the uncertainty, and all the fear. I’ll be at my window each night until the numbers go down instead of up, and the stay-at-home orders are unnecessary. I’ll be making noise for those on the front lines, and connecting with all of my heart.

A Simple Cliche

I remember when typing two sevens, a three, and a four into a calculator and turning it upside down to reveal the word hell was a naughty thing to do. The innocence of that action is stunning to me. I think about people of all ages typing WTH (what the hell) or AF (as f***). Many of the “bad” things of my childhood don’t qualify as bad anymore.

My husband often says I have the sense of humor of a twelve-year-old boy because I make up songs, laugh at bodily functions, and move my body in ways that don’t qualify as dancing. Of course, my husband participates in these antics to get me giggling uncontrollably.

I don’t know about anyone else, but that is the kind of innocence and humor I need right now. Simple humor. Clean humor. Goofy humor. Humor that doesn’t make fun at someone else’s expense or make fun of a group of people.

Lately, when my husband and I are stressed, we watch reruns of America’s Funniest Videos. Neither one of us likes the clips where someone gets hurt, but we love the videos that have animals doing something silly or when something surprising or unexpected happens. The show makes us both laugh.

We are also watching one to three episodes of New Girl before we go to sleep. It isn’t as innocent as the video show, but we find it laugh-out-loud funny, and the main character, Jess, is wholesome and wacky. Each episode is only about twenty minutes, so they are short and can be squeezed in even if we are tired.

It may seem insensitive to seek out a good laugh during a pandemic when so many have lost their lives, and so many people are out of work. It won’t do any good though to risk our well being and then need to use the healthcare system when all of those resources are necessary for COVID-19 patients. Right now, we are living by the old cliché, laughter as medicine, and we take as large a dose of it as possible every day.

 

Schizophrenia and Swimming in Rough Water

Since I started writing this blog, I have almost always wanted to show and tell about the similarities between me and everyone else. I have wanted to be the woman next door or the neighbor that always picks up the mail and waves hello. I have wanted to put a human face on schizophrenia and normalize the illness.

There are days like today, though, that there is no messing around, covering up, or putting a friendly face on my illness. It is severe, it can come from nowhere, and it can be a harsh, brutal, and rough adversary to try and wrestle. Today, it was so difficult with high anxiety, tight muscles that won’t relax no matter how many breathing exercises I do and just a general level of being uncomfortable in my surroundings, body, and mind.

There was even a five minute period when my husband was trying to help me today, where I cried and felt sorry for myself. It felt unfair to have to fight so hard to have an average or even okay day. I’m rarely someone who allows the indulgence of a pity party.

I had that pity party today, though, and there is something else I had. I talked with my husband, but mostly it was directed at me and my expectations. So many days, I tell my husband I am disappointed because of all the time I felt like I wasted. If I don’t have a productive day, I feel like the day is a waste and that I am failing.

Today, I tried to give myself a pep talk. It was a lecture about limitations and acceptance. I am rarely going to have highly productive days where I get three to four hours of writing completed, do some chores, take a shower, write in my journals, read some essays or part of a book, and many other things I wish I were working on or completing every single day.

I realized today that I am hard on myself. In my desire to come across as someone who is high functioning, I almost always feel bad about myself by the end of the day when I do not meet my expectations or ideas of what other people are producing, doing, checking off their to-do lists.

I described my day to my husband as one where I felt like I was barely hanging on by a fingernail. Oh my gosh, I have to remind myself, I have a brain illness. I have schizophrenia. Living with schizophrenia is a challenge. It is difficult. It is always present. It is like swimming in the ocean and getting caught up in the breaking of a wave. Pow, that sand can be hard when the powerful force of a wave slams you into it.

Stigma, jokes, misunderstandings, and stereotypes about schizophrenia are challenging to hear, deal with, and have to try to educate people or ignore. Still, I don’t think there is anything more damaging to me than the disappointment I feel toward myself when I don’t live up to my expectations.

I need to learn how to accept days where getting anything done is a success. I don’t want to lower the bar, but the sense of defeat I feel on bad days requires it. I need to learn to give myself a break. I have a difficult battle, and just staying alive and afloat is the best I can hope for on those rough water days.

Trying to Manage at Home

I’m on the tail end of a panic attack. It was so bad; I had to increase my medication today (something I try not to do unless I have to). I wish I could sob. Not cry, as I do many times each day now, but let the tears and snot fly. I need a release.

The tears that I cry on and off all day are from hearing stories about people dying alone in isolation. I also cry when I hear about all the kind things people are doing right now, like bringing groceries to seniors or families visiting through windows at nursing homes. There are so many sad and sweet things happening right now, there is no shortage of emotion, but I need something more than misty eyes or a single tear that rolls off my chin.

The stress I feel is like a pressure cooker. The tears I cry throughout the day are a small release valve, but I need to pop the lid off the pot and let all of the steam out. Staying home isn’t stressful for me. I stay home all the time, but thinking about getting the illness or a loved one getting the virus and not having a hospital bed, enough nurses or doctors, or no available ventilator builds up the pressure.

The stress of doing everyday tasks like getting the mail, going to the supermarket, taking the trash down the hall, or going to the garage to do laundry, these things, once easy and that required no thought, have become stressful, and they require special preparations and precautions. Everything is harder during this stay-at-home order.

I asked my “friends” on social media what the saddest movie they have ever seen is because I need a terrific cry. I honestly do. I don’t know why the level of stress has kept me from sobbing, but it has, maybe it is all the adrenaline.

I have my first telehealth call with my psychiatrist on Thursday. I am going to ask him to recommend a therapist. I feel like a therapist could help me get through this difficult time. Not everything is terrible, I love having my husband home, but I don’t love the reason why he is at home. The uncertainty of information is hard to handle.

Some officials say that California is successfully flattening the curve, but at the same time, they say things are going to be horrible over the next few weeks. What does that mean? If we are flattening the curve, then isn’t that a good sign, and shouldn’t we be able to avoid shortages and a catastrophe in our health system? No answers, or no certain answers. We are all living on hope.

Typically, hope is such a positive and welcome thing in my life, but I have to admit, I’d be happier with facts and statistics right now. Show me graphs, numbers, and science. Today, it was rough. I’m taking steps to make it better (I plan to watch a tear-jerker before bed), and I’m seeking out my treatment team and looking to add another member to that (a therapist).

If you are feeling the pressure, the stress, the uncertainty, and it is getting the best of you, please find a way to take care of yourself. We all have to be creative about what we can and can’t do to protect our mental health during this time. Reach out if you need to reach out. Watch a sad or funny movie if you think it will help. Don’t forget those who help care for you under normal circumstances like your primary care physician, your psychiatrist, and others. It is an excellent time to use all of your available resources to make sure you are okay. It’s not forever, but it is right now.

The Flight of Birds and Planes

Today marks the seventh day since my husband left the house. I left the house a couple of times to take out the trash and pick up the mail. We aren’t short on fresh air, though. Unless it is raining, we sleep with a large window open in our bedroom. Our living room has three floor- to- ceiling windows, so natural light is in abundance. One window is open now, and although I can hear the distant hum of traffic on I-5, it is eerily quiet for my neighborhood. On a typical day, I can’t leave the living room windows open and work because every twenty minutes, or so a plane flies almost parallel to our window or so it seems to be that close. We live in the flight path of a metropolitan airport.

Before Covid-19, we would have to pause movies or turn up the television so we could hear the voices of the actors or the news anchors on the programs we were watching.  Now, we can watch what we want with the volume at a reasonable level, because there are very few times during the day that we hear the rumble or roar of an airplane.

Many days, I sat on the couch and watched the airplanes, British Air, Jet Blue, Southwest, Alaska, and others, and I would wonder where all the people were going. Were they returning home from a once in a lifetime trip to New York to see the play, Hamilton? Were they returning from a week on the beach in Hawaii? Were they traveling for business? Were they returning from seeing a sick family member? Were they here to vacation to bask in the sunshine of the city where I live?

There are endless scenarios for what brought people to fly by my window and land at the airport less than five miles from my house. Now, the air is still. As my husband and I work side by side during the day, a plane going by is something we notice because it only happens every few hours when before it was a constant stream.

The deep silence that has us noticing a motorcycle on the distant freeway is a reminder of the pandemic. We used to complain about the roar, the loud noise a plane makes as the pilot slows the engines down. We used to look out the window at the long machines carrying bodies from country to country, continent to continent, city to city, and state to state.

As I type this, I can hear birds in the distance, not right outside my window but much farther away. I hear them chirp and sing and call to one another. This pause in our daily activities that we once took for granted is changing my perspective. What once was common now is a luxury. What once was a necessity now appears to be excess.

If we slow down and stay at home for long enough, we might start caring about things we long let slip away from our lives. I might play a board game with my husband. I might plant some herbs in my kitchen. I might spend the whole day reading magazines from cover to cover, or curl up on the couch and finally finish all those shelved books.

The birds are still singing somewhere in the neighborhood. I’m sure they always were. I just couldn’t hear them as life and busyness and distractions, the hustle and bustle was the way we evaluated and lived our lives.

Long After the Virus, or a Letter to Later

Will I remember with fondness the days I woke up side by side with my husband both of us staggering to the kitchen? Him making coffee one day and me making it the next. A little bit to eat. Me, a banana, or canteloupe and some yogurt. Him, a smoothie or a bowl of cereal. A deep hug held for what seems like minutes in the kitchen we have called ours since 2009.

Now is different, though, he will spend the day at this computer, conference calls, video meetings, e-mails. I will stand at my desk upright, sending out pitches to editors trying to land my next assignment. The two of us, in the same room daily for the first time in twenty-two years.

All the years prior, kissing good-bye at the door in the morning hugging in the evening and then sharing conversation about what happened in his world, my world. These exchanges have become not his or hers, but ours. We take a break and play our Xbox Kinect video games. We use our bodies as the controller and get exercise while we compete playing a game of table tennis or a round of bowling. Tossing the ball and getting more gutters than strikes.

I make him a sandwich while I warm up steamed zucchini, carrots, and cauliflower au gratin that he made earlier in the week. We keep a running list of things we are getting low on or that we might like to eat. We don’t know if the store will have any of the items on our list. There is so much that was a certainty a month ago that is uncertainty now.

The uncertainty of living through a global pandemic with the stay at home orders coming from the governor has made people grasp at things to try and gain a sense of control. Hoarding toilet paper, hoarding paper towels, cleaning supplies, bleach, alcohol anything to keep us, we, them, from the death toll that bombards us daily.

It is a virus that has us calling doctors, nurses, janitors, and grocery clerks, heroes. It is a virus that has me spending every day with my husband. For the first time in twenty-two years, we search through recipes together and plan to bake things like oatmeal cookies, cinnamon rolls, and cook things like vegetarian meatloaf with beans instead of beef.

We have always been close. We spent six months in a 17ft. van traveling to thirty-four states. We can be together 24/7 in small spaces. We are fortunate we enjoy each other’s company. His jokes don’t get old. His voice is still pleasing.

This social distancing that we are doing, this stay at home order might be another story we end up telling like our trip to Paris or Abu Dhabi or cross country. Maybe, it will be more like 9/11 or the work we did in New Orleans after Hurricane Katrina. Maybe we will one day talk about out bi-monthly brunches with friends that have turned into meet-ups on video software. Maybe, we will talk about the fear we have for each other and our aging parents, along with everyone we love.

Maybe, we will talk about the slowing down of life, the looking at each other instead of our phones, the conversations we start that often trail off as we go about the days side by side. Maybe, we will talk about how we got this time to get to know each other again. To listen to each other’s hopes, dreams, and fears. Maybe, we will most remember the comfort and joy and passion we shared twenty-two years ago that led us to a little chapel in Las Vegas where we promised to love each other for better or for worse.

I assume some people would call this the worse part, but after breast cancer scares, lymphoma scares, sarcoidosis, schizophrenia, and all the rest, this is the better. Being next to each other and getting a glimpse into each other’s otherwise unknown lives- this is a gift brought to us by the tragedy of a deadly virus.

My First Panic Attack Since the Outbreak Started

Today was the first day since the beginning of the novel coronavirus outbreak that I had a full-blown panic attack. It happened to be the perfect storm. I didn’t take my second sleep (which is what I call the rest I need after my morning dose of medication) because my husband is working from home, and his presence made me forget or disrupt my routine.

For the past two days, I have been obsessively swallowing thinking or imagining that I am beginning to get a sore throat. That continued today. Later in the morning, I thought I had a fever and asked my husband to feel my forehead. He said, “I don’t think so.” I interpreted that as, “It is possible,” and went to get our digital thermometer. I sat in my recliner and put the tip of the thermometer under my tongue. When it beeped, indicating a reading, I looked, and I had a temperature of 94.8. My husband looked that up and said if that were accurate, I would have hypothermia.

I met with a writer friend on Zoom, and I worked in my COVID-19 diary for twenty minutes. I told her after our writing exercise that I was feeling stressed and anxious. After logging off from Zoom, and saying good-bye to my friend, I went back to sit in my recliner, and that is when I started to panic.

I told my husband, who was busy working at his computer, that I was in the midst of a panic attack. He asked if I knew what had triggered it, and I said, “My temperature.”  He went and found our non-digital thermometer and took my temperature for a second time. This time it was 96.6, which is within a healthy range. That didn’t stop the anxiety attack, though.

I realized I was hungry (low blood sugar can cause me to have an anxiety attack). So, I went into the kitchen and ate some hummus and crackers, steamed zucchini, and steamed carrots. After I ate, my husband rubbed my back and put on worship music.

With three things triggering my anxiety: fear of being sick, no second sleep, and allowing myself to get overly hungry, there was no way to break the panic without medication. I took half of my one of my anti-anxiety pills, and we started binge-watching a show we like right now.

Twenty minutes into the show, I started to relax. We watched a full forty-minute episode, and then I fell asleep for an hour. I am happy to report I am now fine and trying to get this day back on track.

Please don’t feel bad if, during this isolation period, you have unproductive, difficult, trying days. It is hard on all of us, mental illness or not. Everyone feels the stress, whether it is financial, health, social, or physical. Challenges are coming at us left and right. As someone on the Internet said, “It is okay, to not be okay.” That’s where I was today, and maybe you are too.

COVID-19, Caregivers, and Mental Illness

I don’t know about you, but when I am facing uncertainty, I play out many scenarios in my mind. What if Jean-Claude gets the novel coronavirus? What if I get it? Will our symptoms require one of us to be hospitalized?

There is also the fear of not enough equipment at the hospital or not enough ICU beds, or ventilators. Those are the concerns of many, but for us, if one of us goes into isolation at the hospital, I will lose my primary source of support in managing schizophrenia.

If I am in isolation at the hospital, Jean-Claude will not be allowed to visit me. I don’t know how being in a hospital surrounded by strangers, without any family or friends will impact me. I don’t think I would fair well.

If Jean-Claude goes to the hospital and into isolation, I know that my symptoms will increase dramatically because of stress. Not seeing him and not being able to judge if he is improving or declining in health will make the situation even worse. Not only will my symptoms be exacerbated, but the person who helps me manage those symptoms will not be present—a tsunami of worst-case scenarios.

I know that most people are experiencing elevated levels of stress right now, but for caregivers and those who rely upon them, the level of stress can be challenging to manage. I know everyone talks about self-care, which is currently over a billion-dollar industry, but most people’s ideas of self-care (watching Netflix, drinking a glass of wine, taking a bubble bath) would do little or nothing to help out in this situation. Coupled with the stress is social isolation. In an ideal world, caregivers have help from family members or friends who can give them a break or carry some of the load. Right now, most of us, if we can, are practicing social distancing.

All of these things add up to more than just a problematic scenario. There is a possibility of a real crisis here for many people. What are all of you doing to take care of yourself and the people you love? Do you have an emergency plan in place? Do you have people checking in on you virtually? What are you doing, thinking? I would like to hear some creative ideas if you have any.